Dementia Care: Positive Initiatives

This month, Human Rights Watch (HRW) published its 157-page report "'They want docile:' How Nursing Homes in the United States Overmedicate People with Dementia." The report documents, per HRW, nursing facilities’ inappropriate use of antipsychotic drugs in older people, as well as the administration of the drugs without informed consent. HRW claims that both offenses arise primarily from inadequate enforcement of existing laws and regulations. The report is based on visits by HRW researchers to 109 nursing facilities, most of which have above-average rates of antipsychotic medication use, between October 2016 and March 2017 in California, Florida, Illinois, Kansas, New York and Texas. The organization performed 323 interviews with people living in nursing facilities, their families, nursing facility staff, long-term care and disability experts, officials, advocacy organizations, long-term care ombudsmen and others. They also analyzed publicly available data and reviewed regulatory standards, government reports and academic studies.

The United States is aging rapidly. Most of the people in the nursing facilities HRW visited are older than 65. Older people now account for one in seven Americans, a total of almost 50 million people. And the number of older Americans is expected to double by 2060. The number of Americans with Alzheimer’s disease, the most common form of dementia, is expected to increase from 5 million today to 15 million in 2050.

While the report uncovered a troubling trend, HRW does not reference the more than 16,000 nursing facilities providing long-term care services and support to meet patients’ needs and respect their rights. In fact, HRW underreports the many initiatives at the local, state and federal levels to increase awareness and provide education and tools for enhanced dementia care.

The problem
For the past decade, our industry has been contending with the nursing facilities administering antipsychotic drugs to people who have not been diagnosed with a condition for which the drugs are approved. The drugs are often given without free and informed consent, which requires a decision based on a discussion of the purpose, risks, benefits and alternatives to medical intervention, as well as the absence of pressure or coercion in making the decision. Most of these individuals have Alzheimer’s disease or another form of dementia.

While these symptoms can be distressing for the people who experience them, their families and nursing facility staff, evidence from clinical trials of the benefits of treating these symptoms with antipsychotic drugs is weak. The U.S. Food and Drug Administration (FDA) never approved them for this use and has warned against it for these symptoms.

Studies find that, on average, antipsychotic drugs almost double the risk of death in older people with dementia. When the drugs are administered without informed consent, people are not making the choice to take such a risk. The HRW report highlights these issues and also points out that the drugs’ sedative effect, rather than any anticipated medical benefit, too often drives their high use in people with dementia.

About the drugs
Antipsychotic drugs alter consciousness and can adversely affect an individual’s ability to interact with others. They can also make it easier for understaffed facilities with direct-care workers inadequately trained in dementia care, to manage people who live there. In many facilities, inadequate staff numbers and training make it nearly impossible to take an individualized, comprehensive approach to care. Per the HRW report, many nursing facilities have staffing levels well below what experts consider the minimum needed to provide appropriate care.

Who is responsible?
The report iterates that the United States has domestic and international legal obligations to protect people who live in nursing facilities from the inappropriate use of antipsychotic drugs, among other violations of their rights. These obligations are particularly important, as people in nursing facilities are often at heightened risk for neglect and abuse. Many individuals in nursing facilities are physically frail, have cognitive disabilities and are isolated from their communities.

The report points the finger at the Centers for Medicare & Medicaid Services (CMS), stating that they are “failing in their duty to protect some of the nation’s most at-risk older people. On paper, nursing home residents’ rights have strong legal protections, but in practice, enforcement is often lacking. Although the federal government has initiated programs to reduce nursing homes’ use of antipsychotic medications and the prevalence of antipsychotic drug use has decreased in recent years, the ongoing forced and medically inappropriate use of antipsychotic drugs continues to violate the rights of vast numbers of residents of nursing facilities.”

To end this practice, the report encourages penalizing noncompliance to a degree sufficient to act as an effective deterrent. It’s beyond the scope of this article to issue a complete assessment of the report, the data upon which it relied, and the misunderstandings and limited views presented in the report. However, the report left out a lot of valuable information about nursing home operations, management, initiatives and efforts to reduce the use of antipsychotics for dementia care.

Positive initiatives
In 2012, recognizing the unacceptably high prevalence of antipsychotic drug use, CMS created the National Partnership to Improve Dementia Care in Nursing Homes. The initiative contributed to the reduction of the use of antipsychotic medications over the last six years. The HRW report fails to recognize the significance of the initiative’s efforts, stating that “it cannot substitute for the effective regulation of nursing homes, including by ensuring that facilities face meaningful sanctions for noncompliance with mandatory standards.” According to the HRW report, its research found that CMS is not using its full authority to address this issue. The report then cites - out of context - that “Recently, CMS is in fact moving in the opposite direction, limiting the severity of financial penalties and the regulatory standards with which facilities must comply.”

Areas of concern
HRW identified several key areas of concern to support the allegations that “CMS and the state agencies with which it contracts to enforce federal regulations are not meeting their obligation to protect people from the nonconsensual, inappropriate use of antipsychotic drugs.” 

CMS has long identified staffing as one of the vital components of a nursing home’s ability to provide quality care. Over time, CMS has utilized staffing data for myriad purposes in an effort to more accurately and effectively gauge its impact on nursing homes’ quality of care. CMS posts staffing information on the CMS Nursing Home Compare website. The Nursing Home Five Star Quality Rating System draws on that information to help consumers understand the level and differences of staffing in nursing homes. Despite CMS’ efforts and the positive directions taken by nursing facilities to hire, train and retain staff, HRW cites lack of minimum staffing regulations as the primary reason for overmedication. 

The HRW report cites weak enforcement of federal regulations, specifically banning chemical restraints and unnecessary drugs. The organization further states that “federal and state enforcement of these regulations is so weak that the drugs are routinely misused without significant penalty.”

Stressing increased government enforcement, HRW states that federal and state governments need to do more to ensure that the rights of residents are adequately protected.

Addressing the issue
Although noteworthy, the “Key Recommendations” from HRW are things providers and regulatory enforcement organizations already know. They have served as the foundation for a number of objectives and initiatives, namely:

  • End the inappropriate use of antipsychotic drugs in older people with dementia in nursing facilities, including many instances in which they are administered without free and informed consent; used as chemical restraints; or where their use qualifies as an “unnecessary drug.”

  • Require nursing facilities and residents’ physicians to seek free and informed consent prior to administering antipsychotic medications to nursing facility residents.

  • Ensure adequate nurse staffing numbers and training levels.

  • Strengthen enforcement on particular subjects linked to the inappropriate use of antipsychotic drugs, including care planning requirements and transfer and discharge rights.

    The HRW report does not fully address that the American Health Care Association (AHCA) launched its metric-based Quality Initiative in 2012 and later joined CMS’ National Partnership to Improve Dementia Care in Nursing Homes, which strives to raise awareness about safe alternatives to antipsychotic medications for residents and patients with dementia through a systems-based, person-centered approach to care. In 2014, AHCA and CMS set goals to further decrease the use of antipsychotics in skilled nursing centers by a total of 30 percent by December 2016.

    On Oct. 2, 2017, the National Partnership to Improve Dementia Care announced that it met that goal by its intended deadline. It also announced a new goal to reduce the prevalence of the drugs’ use by 15 percent by the end of 2019 for long-stay residents in those homes with currently limited reduction rates. The partnership is encouraging nursing homes with low rates of antipsychotic medication use to continue their efforts and maintain their success.

    Between the end of 2011 and the end of the first quarter of 2017, the national prevalence of antipsychotic use in long-stay nursing home residents decreased from 23.9 percent to 15.7 percent nationwide – an overall reduction of 34.1 percent. All 50 states and every CMS region showed improvement. Some states improved more than others. The states with the highest reduction percentages include the District of Columbia (47.8 percent), Tennessee (43.5 percent), California (43 percent) and Arkansas (41.6 percent). The December 2017 update on the initiative shows that, regarding the goal to safely reduce the off-label use of antipsychotics in long-stay nursing center residents by a total of 30 percent by December 2016, 56.8 percent of AHCA members achieved the goal.

    Also, the California Coalition for Person-Centered Care (CCPCC) recognized the issues present in the HRW report and worked collaboratively with many senior care organizations and specialists to develop a toolkit to address that exact concern. CCPCC has long been an active participant-leader in California’s successful efforts to reduce the unnecessary use of antipsychotics in skilled nursing facilities and other senior living environments. CCPCC is a nonprofit coalition of consumers, providers, labor and senior care organizations that focus on enhancing care and services to seniors and their caregivers wherever they may reside or work. Using grant dollars from the California Department of Public Health and the federal Centers for Medicare and Medicaid Services, CCPCC developed materials to reduce the use of antipsychotics.

    The materials focus on improving the quality of care and quality of life for residents with a dementia diagnosis. They provide clear, practical guides for senior living providers and health care professionals to assess, reduce and prevent the unnecessary use of antipsychotics. The organization provides the materials to residents, family members and resident advocates to assist them in asking the right questions and making their decisions.

    This and other helpful information is available free of charge at the following site: CCPCC encourages seniors, their families and care providers, and others interested reducing the use of antipsychotics to access these materials.

    The HRW report also failed to mention CMS’ final rule, which revised the training required for staff charged with dementia management. The entire training section, §483.95, will be implemented in Phase 3 (Nov. 28, 2019) with the exception of training on Abuse/Neglect/Exploitation, Dementia Management and the Feeding Assistant requirement.  These three components were required in the Phase 1 implementation deadline, which was Nov. 28, 2016. Abuse training is currently required, but facilities will have to educate staff as to understanding of the new term “exploitation.” Dementia management training will need to be expanded beyond nurse aides to other direct staff.  CMS indicates that training currently part of the nurse aide training program or existing materials such as “Hand-in-Hand” can be utilized. Staff not currently receiving the required training will need to be brought up to compliance with the new requirement.    

    As a CMS initiative, dementia care is a major focus. The earlier dementia-focused surveys identified deficits in training, and CMS has continued those surveys’ selective use.  Materials produced from those surveys is available from CMS in S&C 16-04. Facilities should familiarize themselves with these documents and use them to assess their current needs.

    There are many evidence-based resources for improving dementia care in nursing homes and assisted living facilities. The Alzheimer’s Association’s Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes focuses on a different set of care recommendations that can make a significant difference in an individual’s quality of life. Phase 1 focuses on the basics of good dementia care and three care areas: food and fluid consumption, pain management and social engagement. Phase 2 covers three additional care areas — wandering, falls and physical restraints. In the next few years, the association will add recommendations in new care areas, such as end-of-life care, and update recommendations as new evidence on effective care intervention becomes available. Download the program here:

    Also, experts from Rutgers Institute for Health, Health Care Policy and Aging Research and Duke University School of Nursing presented research findings on efforts to improve the safety of care for nursing home residents with dementia at the 21st World Congress of Gerontology and Geriatrics.

    Implementing best practices and continuing to collaborate on initiatives to improve dementia care in nursing homes and assisted living is our continued mission. Despite the HRW report, these efforts have shown results that have enhanced the lives of many of our aging community. For more information, please contact me for discussion, resources and assistance with developing and implementing best practices and compliance with state and federal regulations.

    Rebecca Adelman, PLLC, Esq. - Ms. Adelman is an entrepreneur and founding shareholder of Hagwood Adelman Tipton PC. She practices in the firm’s Memphis, Tennessee, office. For nearly 30 years, Rebecca has concentrated her practice in insurance defense litigation representing national insurance carriers and self-insureds with a concentration in health care law. She also has an active business and employment practice. Please feel free to contact her at or visit her website: and Instagram @rebecca_adelman.

Rebecca Adelman